People who have Ehlers-Danlos syndrome (EDS) sometimes need to undergo surgery to fix joint problems or treat fractures. However, such procedures can be problematic. Here are some things to consider about EDS and surgery.
What is EDS?
EDS refers to a group of genetic disorders affecting the connective tissues that provide structure to joints, skin, blood vessels, and other tissues and organs. It is chiefly characterized by joint hypermobility and instability, skin texture anomalies, and vascular and soft tissue fragility.
Is surgery risky?
Because of possible complications, you should only consider surgery as a last resort. Common complications include excessive bleeding, problems with wound healing, and tears in blood vessels.
Vascular conditions associated with EDS, including fragile blood vessels, can also cause complications.
Routine surgical procedures such as anesthetic injections can cause ruptured blood vessels and hemorrhage.
How can I optimize the outcome of my surgery?
Optimal treatment starts with a surgeon who has EDS knowledge and experience. Even if it is a relatively minor surgery, you should strongly consider getting a referral to a specialized facility. For the best possible outcomes, you should ask for a medical team that is familiar with your specific risks and needs.
What kind of surgery might I need?
You may need surgery to address painful conditions, such as peripheral nerve compression, or to repair, replace, or stabilize joints damaged by multiple dislocations. It also may be necessary to repair ruptured blood vessels or organs, or treat craniocervical instability.
What can I do before surgery?
You should consult with your surgeon and other medical professionals before any procedure, and undergo evaluations to determine possible heart, lung, and bleeding problems. Lung issues raise the risk of lung collapse. In the case of a mitral valve prolapse (floppy heart valve), you may need antibiotics to lower the risk of infection. You should also discuss pain medication.
What precautions are needed during surgery?
The surgeon should avoid intramuscular injections because they can cause excessive bruising. Care should be taken not to cause injury to or dislocation of joints when elevating your limbs. And because your skin and soft tissues are sensitive, the surgeon must avoid possible injury-causing retractions (pulling back of tissue). He or she should close wounds with subcuticular stitches and use adhesive dressings, which should remain on longer than usual to improve the healing process.
What happens after surgery?
Rehabilitation after surgery has to be in line with your particular situation, and be developed in coordination with a physiotherapist.
Last updated: May 6, 2020
Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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